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 Introduction 
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Introduction
Wow, this seems like a great site. My daughter talks about it constantly, SunsetLghtHouse. It is hard to do this introduction. That means that I have to accept that Ron (husband) actually has Lewy Body. Ron is 67 and the love of my life. He has had dementia for years, 7 or 8 (or longer?). Not sure what to say. If I actually think about things, I feel overwhelmed. Ron is in the hospital right now. Has been for a week. Never know if he will be awake or not when I go in, or if he will stay that way. I miss him. He is part of my heart. Well, we are living in Delaware, have 3 wonderful children, 2 very special in-law children, 2 dogs (Border Collie and Yorkie) and 6 wonderful grandchildren. We have been blessed by God in our lives. Even with this disease, we are so fortunate. Until this last week, not a day has gone by that Ron has not told me he loved me, not a day.

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Katie, married to the love of my life on June 14, 1969.


Mon Aug 22, 2011 1:12 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Introduction
You are indeed fortunate that inspite of having dementia so long Ron is still able to express his love. Never doubt that even if he loses the ability to say it, it continues to be true.

I'm glad you've joined us. I hope you will find some comfort in knowing you are not alone, and perhaps some practical tips as well.

Welcome!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Aug 22, 2011 1:41 am
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Joined: Tue Mar 29, 2011 3:09 pm
Posts: 20
Post Re: Introduction
Hello and welcome. Just knowing you are not alone will hopefully make this journey a tiny bit easier. This is a truly wonderful site.

Marilyn


Mon Aug 22, 2011 2:51 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Introduction
Welcome, Hang on to all the wonderful memories and that your husband can still express his love for you. As already said, it's a long bumpy road and, at some point, it may only be memories that you have to hang on to. Frank was also 67 when dx but he had retired at 62 because of difficulties doing his work, so who knows when the LBD really started. Please read and post often.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Aug 22, 2011 4:51 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Introduction
Sorry for your need to be here, but welcome. It is such a heartbreaking disease, but this is a wonderful site and there is great comfort, advice and support to be found here among wonderful friends,
Ger x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Aug 22, 2011 6:11 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Introduction
Welcome! This site has helped me so much and I feel like I have this great circle of support and friends that I didn't have before. As challenging as this disease can be, it's comforting to know that somewhere on this forum I will get the answers to the latest problem. I look forward to getting to know you.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Aug 22, 2011 11:41 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Introduction
Welcome Kate....
The people here are so wonderful!!! I hope you will find comfort and support here!!!
Take care,

Tonya

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First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Aug 22, 2011 3:07 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Introduction
Kate,
Welcome to the LBDA forums, I hope you find this a place of comfort and great information, I am sorry for what the family is going through but here you will talk with people who can help with the understanding of this illness !

Good Luck!

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Irene Selak


Mon Aug 22, 2011 5:09 pm
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Re: Introduction
Hellooooooooooooooo, Mother! :)

Love you!

_________________
Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Mon Aug 22, 2011 9:54 pm
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Introduction
Well, it has been a long day. This is the second day in a row that Ron has been lucid and totally aware. He is still in the hospital and will be till the end of the week, at least. But he had a very good day. Thank you, all, for your welcome. I have been up since 4:30 am. Hope you all have a great evening. I look forward to talking more.

_________________
Katie, married to the love of my life on June 14, 1969.


Mon Aug 22, 2011 10:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Introduction
Kate, I'm so glad your husband is doing better! Lewy is such a roller coaster ride. I also want to extend a warm welcome to you. So glad you're here but so sorry you have to be. Hugs!

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Aug 22, 2011 10:37 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Introduction
Welcome Kate, glad ye had a good day,
Ger x

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Aug 23, 2011 5:06 am
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Introduction
:P Well, the day is better and better. I can say that Ron is back to himself. I honestly expect him to be home by the weekend. That is so exciting. He tends to lean towards sundowners so he is getting a tad confused and irritated, but that is normal for Ron. It is so good to see him talking and just being himself. I had my doubts when I sat and watched a zombie for two days at a time. It is so very nice to be able to voice my thoughts. So many want to be there for me, and I am so grateful, but they honestly have no idea. I hate to always seem like I am complaining. But here? Well, you guys are great! Thank you so much.

_________________
Katie, married to the love of my life on June 14, 1969.


Tue Aug 23, 2011 6:30 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Introduction
Kate,
Once we get through the introductions its best if we post in the area's that best fit your comments or questions, so many don't read the intro area's, that way you have more eyes on your posts.
Yep as Pat was saying this sure is a Rollercoaster, I am glad your Ron is having a better day enjoy each and every one of them !

_________________
Irene Selak


Tue Aug 23, 2011 8:01 pm
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Introduction
Thanks, Irene. I appreciate the comment. Have a great evening!

_________________
Katie, married to the love of my life on June 14, 1969.


Tue Aug 23, 2011 8:28 pm
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